I normally post on the last day of February which is Rare Disease Day but wanted to share a little early this year.

I have been struggling a bit over the news I shared in my last blog regarding my most recent appointment. While I have had random bursts of tears behind closed doors on occasion, I also think it’s more tears of overwhelmed gratitude for the life the Lord has blessed me with.

I started going through the last year of pictures for my video and noticed I didn’t have as many pictures from my procedures (I had angioplasty in January, March and September) because doctors had to start going through my groin again to intervene…too many angioplasties have damaged veins in my arms making them hard to access. Now we are trying to limit the amount of angioplasties altogether so I’ll have even fewer pictures.

As I was scrolling, a song came on and seemed to correlate perfectly so I couldn’t help but add a couple of old favorite pictures from earlier years in the video as well. While there is a lot of pain behind my smile, I think the song speaks for itself as to how my last year…and every year has been like living with fibrosing mediastinitis, SVC syndrome, congestive heart failure and pulmonary arterial hypertension…how can I not feel loved?💕

I am so grateful for all of you who not only reach out to see how I am doing, but to those who also share your story in hopes of finding better treatment options and a cure for the next person who is diagnosed with the same rare disease we continue to fight.

Make sure to wear your zebra print or black and white stripes on February 28th to show love and support for those battling a rare disease…alone we are rare, together we are strong💕